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A bitter pill to swallow

There was an outcry in September when we learned that children in Scotland were being given a homoeopathic "MMR vaccine", a product that offered no protection against the serious dangers posed by measles, mumps and, for pregnant women, rubella. This had echoes of the discovery a few years ago by Sense About Science, Simon Singh and Newsnight that some pharmacists were offering homoeopathic pills for protection against malaria to people travelling to Central Africa. Such practices may be disturbing, but they occur because we tend to think there is no harm in indulging the clamour to maintain the alternative health market.

Reading the 11 October issue of the New Statesman, I was shocked by an advertisement in the accompanying supplement, "Social Care: Who Pays?", referring to me and my work. Rarely had I seen an advert so inaccurate and borderline libellous in a respected publi­cation. The advert, which appeared to breach the British Code of Advertising, was by a lobby group called Homeopathy: Medicine for the 21st Century (H:MC21). It contained unjustified attacks on myself and colleagues, including statements that gave a dangerously false impression of homoeopathy's therapeutic value.

As the advert questioned my own competence, I should address this first. I started my medical career in a homoeopathic hospital, where I was trained in homoeopathy for several months. Many years later, it became my job to apply science to this field and I felt I had a duty to keep an open mind - open but not uncritical.

A critical mind would notice that the two basic principles of homoeopathy fly in the face of science, logic and common sense. The first assumption is that "like cures like". For instance, if onions make my eyes and nose water, homoeopathic remedies derived from onions can be used to treat my patients' hay fever, which sometimes causes runny eyes and noses. The second assumption proposes that diluting remedies homoeopathically makes them not less but more potent, even if the final preparation no longer contains a single molecule of any active substance. These theories are not based on anything that remotely resembles fact. Like does not cure like, and endlessly diluting remedies certainly does not render them stronger, but weaker. But is there some entirely new energy to be discovered that we do not yet comprehend? Not understanding homoeopathy does not necessarily mean that it is useless.

The best way to find out is to determine whether homoeopathic remedies behave differently from placebos when patients use them. In other words, we need clinical trials.

Data gap

About 150 such studies (mostly conducted by homoeopaths) and well over a dozen syntheses of this research are available. Their results are sobering: the totality of the most reliable evidence fails to show that homoeopathic remedies work better than placebos. So, after about 200 years of research, there is no good data to convince non-homoeopaths that homoeopa­thic remedies are any different from pure sugar pills. Pro-homoeopathic lobby groups such as the one that placed the advertisement therefore have to employ propaganda to try to convince consumers who may not know better. This is perhaps understandable, but surely not right.

What of patients' experience, some might ask. Thousands of people across the world swear by homoeopathy. Are they all deluded? Clearly not. People undoubtedly do get better after seeing a homoeopath. There are many observational studies to show that this is true. Homoeopaths therefore keep telling us that their treatments work, regardless of the implausibility of homoeopathy's principles and the largely negative trial evidence.

When we rationally analyse this apparent contradiction of evidence versus experience, it quickly dissolves into thin air. The empathic encounter with a homoeopath is just one of many factors that provide ample explanation for the observation that patients can improve even when they receive placebos. A case in point is Bristol Homoeopathic Hospital's 2005 study, cited in the offending advert. The 6,500 chronically ill patients might have im­proved because of the concomitant use of conventional treatments, or because of the attention they experienced, or because of their own expectation to improve, or because the disease process had come to an end. In fact, they might have improved not because of, but despite, the homoeopathic remedies they were given.

Still, some people ask what is wrong with using placebos as long as they help patients feel better. The answer is that it prevents clinicians telling the truth to patients. Being honest would defeat any placebo effect: if I tell my patient, "Take this remedy; it contains nothing and the trial data shows nothing," she is unlikely to experience a placebo response. Hence, homoeopaths, knowingly or unknowingly, deprive patients of informed consent. This paternalistic approach is recognised as unethical. Also, placebo effects are unreliable and normally short-lived; they happen occasionally but often do not. Even if placebo responses are generated, they are usually small - certainly too small to compete with effective therapies.

Twin-track effect

Endorsing homoeopathic placebos would mean that people might use them for serious, treatable conditions. In such circumstances, homoeopathy can even cause (and has caused) the death of patients. Furthermore, if we allow the homoeopathic industry to sell placebos, we must do the same for "Big Pharma". Imagine a world where pharmaceutical companies could sell us placebos for all sorts of conditions just because some patients experience benefits through a placebo response.

Crucially, and paradoxically, we don't need placebos to generate placebo effects. If I, for instance, prescribe an antihistamine for a patient suffering from hay fever, with empathy, time and understanding, that patient benefits from a placebo effect as well as the pharmacological action of the antihistamine. If, by contrast, I prescribe a homoeopathic remedy, I deprive her of the latter, crucial benefit. It is difficult to argue, as most homoeopaths try to, that this approach would be in the interest of my patient.

What follows is straightforward: there is no good evidence that homoeopathy does more good than harm. This is not just my conclusion after 17 years of researching the subject, but a fact based on the best available evidence, which is supported by virtually all experts who are not homoeopaths. The recent decision by the coalition government to continue homoeopathy on the NHS is thus puzzling, to say the least.The advertisement that prompted this article is misleading about the work of experts which has conclusively shown that homoeopathy can have no place in evidence-based medicine. It is an insult to our intelligence.

Edzard Ernst is professor of complementary medicine at the Peninsula Medical School, University of Exeter, and co-author, with Simon Singh, of "Trick or Treatment? Alternative Medicine on Trial" (Corgi, £8.99)

Here comes the non-science

Homoeopathy was developed in 1796 by the German physician Samuel Hahnemann. He based his treatments on the twin ideas that "like cures like" and "less is more". The latter notion was implemented by taking a substance and diluting it over and over again, so that the final product generally contains not a single molecule of the original active ingredient.

Homoeopaths accept that most of their remedies are devoid of pharmacologically active principles, but they argue that the pills contain a "memory" of the original ingredient. The memory is supposedly imprinted in the diluting agent, which is used to moisten sugar pills.

Although homoeopathy defies the laws of physics, chemistry, biology and therapeutics, there have been numerous attempts to test its impact on patients through clinical trials. In 2005, Aijing Shang and seven colleagues from the University of Berne published an analysis of the best trials in the Lancet.

Their findings confirmed many other such published assessments. Commenting on the paper, they wrote: "This finding is compatible with the notion that the clinical effects of homoeopathy are placebo effects." An accompanying editorial entitled "The end of homoeopathy" said: "Doctors need to be bold and honest with their patients about homoeopathy's lack of benefit."

I am so excited that you are excited! Welcome to Carnegie Hall and – thank you! – Welcome to a very what I hope is a very special evening. More than 25 years ago, an author put pen to paper and created one of the most extraordinary stories that the world has ever seen. Her astounding imagination continues to thrill us, it captivates us, it enthrals us, it moves us, and it leaves us wanting more. And tonight ladies and gentlemen. . . there will be more.

But ten years ago, an unimaginable image and an unthinkable story propelled her down a very different path – where the lives of millions of voiceless children would need saving. The author is J K Rowling, and the path is Lumos.

Tonight, we will cast a light on eight million hidden children around the world who desperately need our help.

FILM – NARRATED BY J K ROWLING:A child’s life is so much more than the sum of its parts ‐ and the love a family brings holds everything together. From the very beginning, a child thrives on individual care and attention. A baby quickly forges a bond with loving parents – and because of this bond the brain develops with remarkable speed and complexity. Within a safe, secure and stimulating environment a child gets the most out of life; in play, education and friendship their personalities develop freely within safe bounds. But this picture of childhood can be a fragile one. Conflict and disaster can destroy the foundations of family life. When countries suffer the effects of extreme poverty, the bond which holds families together can easily be broken apart. In these circumstances, families can feel they have no choice but to place their child into a so-called orphanage, especially if the child is disabled and needs care the family cannot afford. Community support alternatives may not even exist. That orphanages do exist locally may convince desperate parents that there is no alternative. But once a child enters an orphanage, a very different picture of childhood can emerge. A child must now compete for the unique attention they crave. A lack of individual care harms babies and affects their infant brains at a critical stage. Any schooling they receive is no compensation for the parental love they are denied, and children can become cut off from the world. Ill-prepared for life outside they have very poor life chances, and they are much more likely to fall victim to abuse and crime once they leave an orphanage. And we know there are at least 8 million of these children worldwide. But there is hope ‐ and it lies at the very heart of the problem. 80 per cent of children in orphanages are not in fact orphans but have parents or extended families who could care for them, given some support. And by better channelling of existing donations, we can support these vulnerable children at home. By directing funds away from so-called orphanages we can transform systems of care; we can establish community‐based services and prevent these places from ever taking root. Community‐based services are a better investment for donors: they are more cost efficient than residential care and reward children and communities in the long run. Placing children into orphanages is a choice and not a necessity; it is preventable and reversible. And by giving communities options in how they support families, we can change the lives of millions of children and give them strong beginnings ‐ and the futures they deserve.

ER: So now to hear more about Lumos and its life-changing work, please welcome to the stage its founder. Ladies and gentlemen, the extraordinary J K Rowling.

JKR: Thank you, thank you very much.

ER: So here we are!

JKR: Here we are!

ER: This is a big deal. We’re playing Carnegie Hall!

JKR: We are, yes. It’s actually my second time!

ER: Really? Alright, so in a short while we get to show these people our little movie.

JKR: Yeah, which is exciting and a little bit terrifying.

ER: And we will get onto talking about that in a little bit. But first, the reason we’re all here. So we’ve just seen this film – this is clearly a massive humanitarian issue, and a gigantic undertaking. I wondered: why this issue? Why is it so close to your heart?

JKR: Well, I think Eddie said it really well in his introduction – truth is that I saw a newspaper story about a very small boy, he was seven years old and he was effectively being kept in a cage. And I was pregnant at the time and I saw this image in the newspaper, and it was such a shocking image of this child – holding onto wire and screaming – that I went to turn the page. I went to turn the page because it was painful to look at, and I felt very ashamed. As I went to the page, I thought: No, no, you have to read the story, and if it’s as bad as it looks, you gotta do something about it. So I read the story, and it was even worse than it looked.

So to cut a very long story short, I pulled out the news story – which was all about an institution in the Czech Republic where very young children were being kept in appalling conditions. I went home the next day, Monday, [and] I started to write letters to anyone I could think of – MPs, and MEPs, and the president of the Czech Republic. I wrote to everyone I could think of, and that led me to connecting with experts in this field, and the creation of Lumos.

ER: And so there are eight million children living in orphanages worldwide –

JKR: That we know that we know of! See, I think what’s staggering with. . . what was amazing to me when I first began finding out about this these issues, you think how could eight million children be going through this and we don’t know? But a very small amount of thought shows you they are – as you just said – so voiceless. They are literally hidden from sight. So in fact eight million may be a conservative estimate – there may be more children who have been taken from families that we don’t know about, because record-keeping tends to be poor, which is one of the problems.

ER: And they are institutions that we are saying are harmful to children – I suppose, I imagine, not everyone agrees?

JKR: Absolutely so it is completely understandable that we – and by ‘we’ I mean wealthy Westerners – we may have an idea that institutions are kind. Kind in that otherwise perhaps the child will be on the street, or the child is alone. That’s completely understandable. We tend to have that image in our minds from movies, like Annie, that orphanages can be kind of fun! Actually, that’s not true – even the well-run ones are proven, as we saw in that short film, to do often irreparable harm. You will know, because he has – you have a baby now, who is five months old?

ER: Yup.

JKR: And you will know, as I know as all of us who have anything to do with small children know: that they are hard-wired to demand love. They just come out looking for it, because that’s what they need for brain development. And as was shown in this movie, we know that children who are raised in institutions suffer developmental delays, they tend to be physically stunted, they normally have psychological trauma… it is just not what nature intended for children to be herded together, and not given individual love and care.

ER: And are there sort of studies and statistics which support [this]?

JKR: Absolutely, so I’m not just saying this – plucking this out of the air to tell you. We have 80 years of research now that shows very, very clearly – all the research agrees – that this is very harmful. And in fact Lumos works with scientists in the field who can show you brain scans, showing the difference between a child that’s come from an institution and a child has been raised in a family.

As the movie showed, one large recent study shows that children who come out of institutions were six times more likely to have been abused;

10 times more likely to enter prostitution; 40 times more likely to have a criminal record.

And they were 500 times more likely to kill themselves. So you see we do have this enormous bank of research telling us that we are allowing or even inadvertently causing children to be harmed.

ER: For me, one of the complicated things get my head round – and, I suppose, for people in developed countries like the US or the UK in which institutionalisation is a thing of the past – one of the things we struggle with is there’s this sort of disconnect in terms of how we view orphanages.

JKR: I completely agree. I think a small amount of thought shows us if you imagine what would happen – God forbid – were a terrible natural disaster to hit New York tonight, everyone I think would immediately think “Well, the important thing is I keep my loved ones close to me, we stay together and we get the support we need to rebuild our business, find ourselves a home”… When we put ourselves and our families in that in that mentally in that position we understand. However, what’s happening across the developed world is disaster hits and families are immediately pulled apart: “we’ll take those children from you.” Now, imagine that, in the wake of the disaster, people come to you and say: “that child will get fed only if you give me that child.” And we keep propping up the system, and it’s causing a huge amount of damage.

ER: And so is that why families are being torn apart? Why do parents give them up?

JKR: Right, exactly – for many people, that’s the key question. So when I tell people [that] 80 per cent of these children have parents, then an understandable reaction is “what loving parent could give up their child to one of these places?” But we know that there are three main drivers into institutions. The biggest one, the overwhelming one, is poverty.

So parents who make themselves literally be starving are told “if you want to feed that child, we will take it to the institution – the child will get food in the institution.” So they literally believe “that’s how my child will be fed and survive – I’ll have to give the child.” The other one is disability. We find in the developed world, and certainly this was the case in Eastern Europe, where we’re doing a lot of work, children with disabilities were not integrated. And so parents again were told “if you want medical assistance for a disabled child, or if you want that child educated they have to go into the institution.”

And then the third driver is natural disaster, and this is where a very nasty aspect of institutionalisation comes in. It is often the case in the developed world, the so-called orphanages are run as businesses, and that effectively children are trafficked for profit because we Westerners are generous and we can we give a lot of money to these orphanages. And unfortunately there are very unscrupulous people, who in the wake of disasters use it as an opportunity to get children and corral children as a magnet for foreign money, rather than putting the money into systems of care that would keep families together. So since 2010, there has been a 700 per cent increase in children in institutions in Haiti.

ER: So, for me. . . what’s the solution? How does one go about it?

JKR: Obviously this is this is a massive issue, a massive issue. And, as you would imagine, the solution is complex but – I bring you hope! This is an entirely solvable issue. This is entirely solvable, and we know how to do it. Doesn’t mean it’s easy – but we know how to do it. So it’s a two-part problem: first of all we have these children, some of them living in truly appalling conditions, whom we need to rescue.

The other part of the issue is we need to stop children going into those institutions in the first place, ever again. Lumos’ ambition – and we believe it’s achievable – is that by 2050 we will have ended institutionalisation globally. Now, that’s going to be a huge amount of work, clearly, but a lot of us are really up for that. So, first thing is we need to put into place different systems of care, and some very good news is institutions are very, very, expensive to run. And if we just redirected the funds that are being pumped into institutions, that alone would enable better systems of care to be set up.

But you also need a lot of expertise, and what we do with Lumos is, we work with people in country who are already trying to change these systems. So that’s the point I always really like to get across, we are not moving into countries and saying: “let us show you how it’s done.” We are walking into countries because in all of these countries there are experts, who know the system’s wrong, but they don’t have the money and they don’t have the clout, and they aren’t connected with the kind of people who can help them change systems. We can go in and help them do, that so that’s what we do. We go in and we try and affect the change.

We also do things like – I mean, we’ve provided urgent medical assistance to children we’ve found in very, very bad situations and so on. So it’s multi-layered, and then the other thing we do is advocacy, so we work with places like the UN and the EU to change policy, to stop this being the default position when disasters happen.

ER: I think I read that every year, particularly in this country [the US], millions of dollars are being given to orphanages.

JKR: That’s right. I have these notes because I want to get the figures right – because normally I just make it up out of my head, like people say “how many house elves are in the Hogwarts kitchen?” and I just [gestures]. But this is really important – I’m not saying house elves aren’t important, they clearly have been massive in my life, they mean a lot to a lot of people. . .

But I want to get this right because this is this important. So, this is an incredible figure: this is how much Americans give to charity annually – how awesome are Americans? – The answer is $375bn. So I mean that is phenomenal, that’s phenomenal and just warms ones heart to think about the generosity. Now, that money was given with the absolute best possible intentions. There’s not one person here tonight, I know, of any age, that does not want to help a child in trouble. It’s a human instinct that we all have.

We know that that money drove a lot of children into orphanages who probably didn’t need to be – well, no child needs to be in an orphanage. But we know that it created a drive-in. And, so what I would like, even if you never give us another penny – I’m so grateful for what you have given us tonight, we will always be able to use money very effectively because these children have very complex needs.

But even if you never give us another penny, if you just walk out of here tonight and explain to people that donating to orphanages or volunteering and orphanages is sometimes propping up some very corrupt people making a lot of money, and if you give your money to community-based services you can actually help ten times as many children. Just checking my notes – ten times as many children.

ER: You mentioned Haiti – that is somewhere that is obviously in our minds of the moment.

JKR: It is, hugely in our minds. In my mind a lot at the moment because, we know and I have more figures here – these are new figures to me, because obviously there’s recently been an absolute catastrophe there. So we now know that there are 30,000 children institutionalised, and the same statistic I keep quoting still applies: the overwhelming majority of those children have at least one parent, and these are families whose livelihoods have been swept away, these are families who were so desperate that they thought that was the only way they were going to keep that child alive. Which is an absolutely heart-breaking thing to me and I know it will be to you also.

There is a lot of corruption in Haiti, and we know that there are people who are called child finders – not childminders – these child finders are out there persuading parents to give up their children to orphanages, and making lots of promises to them about what they can do for that child in terms of protection and care. And those children are not receiving protection and care – rather the reverse.

We know that a lot of child trafficking is going on, and we also know that for each child in an orphanage in Haiti, currently each child is attracting six thousand dollars’ worth of foreign aid, and that’s why it is becoming a business. So people with the best possible intentions are giving money, and I think they might be horrified to see what’s going on. So what I’m saying to you is, for God’s sake don’t stop giving money, but give it right. Give it to NGOs that are working to give people back livelihoods and to support communities, not to institutions.

ER: And Hurricane Matthew has exacerbated that…

JKR: Hurricane Matthew was, as we all know, an absolute nightmare: half a million people lost their livelihoods, we have 900 dead, and it will – unless we intervene in the correct way – continue to prop up this very damaging system. And I will say this because I would like you all to know, that I put my money where my mouth is: I gave a million pounds last week to Haiti to support community-based services. And I’m not saying it for that reason – I kind of cringe slightly as I even say that – because I’m not saying it for that reason. I’m saying that I’m not asking anyone to give where I’m not already giving, but Haiti is a particular catastrophe and I wanted to give extra funds to Haiti right now through Lumos, because Lumos is on the ground right now affecting this kind of change, and really looking out for those children in those institutions.

ER: And recently Bonnie Wright and Evanna Lynch – so Ginny Weasley and Luna Lovegood from the Potter films – who we love! And I think Bonnie is here this evening – but they are two incredibly dedicated Lumos ambassadors, who visited Haiti, and they not only saw the horrific conditions but also they saw the solution that you’ve been talking about Jo and we actually have some footage from the trip here:

FILM – NARRATED BY BONNIE WRIGHT AND EVANNA LYNCH:“Hi, my name is Bonnie Wright and I’m an actress and director. You may know may know me as Ginny Weasley from the Harry Potter films. But today I am here in Haiti with Evanna Lynch, who you may know as Luna Lovegood. We decided to come to Haiti because we’re concerned about the 30 thousand children living here in orphanages instead of at home with their families. 80 percent of these children have families who would care for them but cannot. I was incredibly shocked and upset to find the conditions at the first orphanage we visited. I’ve heard so much about the work that Lumos was doing and from some of the workers here about what these institutions were like, but I think out of this first visit just highlighted how incredibly important Lumos’ work is here in Haiti. The most important thing that I took away from today is that children really need to grow up in families.”

“Without family and without love, children can’t be children. The most important thing as a child is to be with your family, and you have to do everything you can to keep that family unit in place.”

ER: Those are pretty profoundly powerful images.

JKR: They are, they are but you know… we’re obviously doing a lot of work in Latin America now, it’s an area that does have a problem with institutionalisation. But we are very hopeful at Lumos that we could reach a tipping point in five years or so, where we can we can change policy. We are very hopeful that by 2035 – if we can get the funds – we will be able to stop institutionalisation in Latin America. We believe that.

ER: So it’s solvable?

JKR: It is solvable. It sounds overwhelming when you think of that number of children, and the complexity – I’m not denying the solutions are complex. But Lumos is working with absolute experts in this field. They know what they’re doing, they know how to make it work, and what they need are the funds and the support. And the last thing I would say – particularly to young people in the audience today – I would reiterate: we need to change minds.

We need to change minds, because while people are putting money into these orphanages and while people are volunteering in orphanages, a lot of corruption flourishes around those institutions. There is a sense that we are, as ever with the best intentions, propping up something that’s very damaging. Those children should be with their families, and if they can’t be with families, foster care, or adoption, or supported living in small family-style units are all proven to be the best possible alternatives.

ER: What can we do? Tell us what we can do!

JKR: I think its two-part as I say so number one, I am going to firstly say I could not be more grateful all of you being here tonight. You’ve already done the most enormous amount for us to raise money for us and thank you, thank you. So fifty percent of what you can do: if you want to fundraise for us, I will be forever in your debt.

The other half though as I say is, if everyone who is here tonight walked out of here and said: “I get the issue! I know that institutionalisation is wrong, and in future when I donate, when I hear a friend donating, and saying they want to give some money away at Christmas, I will say “not the orphanages.”” But look, if you want to give it to a child in the developing world, look at community-based services. We’re not the only NGO working in the field, we are one of several, so do a little bit of research and make sure that you are supporting families to stay together.

ER: We will spread the word, we will spread the word. That is our job, to spread the word. And I’ve got to say, having known so little about it before, it’s an extraordinary thing and it’s a complicated thing, but as you say solvable. And you must be incredibly proud of the work that Lumos are doing.

JKR: I am – it’s probably the thing of which I am most proud.

This conversation took place on 12 November 2016 at Carnegie Hall, New York City.

This December, the New Statesman is joining with Lumos to raise money to help institutionalised children in Haiti return to family life. In the wake of Hurricane Matthew, funds are needed to help those who have become separated from their families. Please consider pledging your support at bit.ly/lumosns

Thanks to Lumos’s 100 per cent pledge, every penny of your donation goes straight to the programme. For more information, see: wearelumos.org